USH Panel Discussion
Saturday, July 13, 2019, 3:30 pm - 4:45 pm EST
Philadelphia Marriott Downtown
Marriott Ballroom, 5th Floor
USH Panel Speakers
Born with Usher Type 1C. (Click for Bio)
Dr. Jeffrey Bohrman was born with Usher Type 1C (German Jewish, not French Cajun). He had a strong oral upbringing despite his impaired speech. He did not learn ASL formally until he was 41. After Jeff graduated from Clarke School for the Deaf, he started high school in Philadelphia where his family had settled down after many years growing up in Northeast New Jersey. Jeff went on to graduate high school and earn four college degrees, all without having interpreters, which were not available in those days. His doctorate was in Pharmacology. He worked as a pharmacy intern and became registered in Illinois.
Jeff did his postdoctoral fellowship through the University of Tennessee and worked as a research pharmacologist in a federal agency in Ohio for ten years before being forced to go on disability due to his blindness. After an intensive rehabilitation training, he became an accomplished Program Director of a statewide program for DeafBlind services in Ohio for 21 years. He was an active member and served on the board of local, state, national, and international organizations dealing with DeafBlindness. Jeff has retired to Chicago with his wife of nearly 49 years. They have two children and four grandchildren.
Advocate for the deaf-blind community around the globe. (Click for Bio)
Wasim was born in Pakistan; he arrived in America at the age of nineteen, two months after 9/11. Wasim is a graduate of Walden University with a degree in Healthcare Information Systems. Since becoming deaf and blind, Wasim created a series of informative videos under the name, “DeafBlind Warrior”, to help educate people, with and without Usher syndrome. His goal is to bring awareness to Usher syndrome, to people all over the globe.
Diagnosed with Usher Syndrome 2A. (Click for Bio)
Sandra Scala has Usher syndrome (USH2A), and anxiety, and has been through stages of dark times in her life. She still has her moments; BUT, keeps pushing forward! She is a 39-year-old stay-at-home mom, whose focus in life is her family (three of her own, and four stepchildren, three of which are on the Autism Spectrum, ADHD, and one with Tourette’s Syndrome). She also has a Guide Dog, Mimi.
Sandra has a passion for writing, blogging, and speaking, and is hoping to make a difference through her blog - The Mind, Untangled. She has a book, “New Beginnings” where she shares her thoughts. She was invited to do an Interview on a live television show in Cyrpus, where she shared her story, and this can be found on her website www.theminduntangled.com.
Sandra is at the point where she is ready to share her stories and face her fears. She takes one day at a time, making the most of life and what it has to offer - all in hopes to MOTIVATE and INSPIRE – adults, parents, kids, teens – to keep moving forward, and know that they are NOT alone! “Let’s untangle our mind, and set it free…”
Mother of two daughters with USH1B. (Click for Bio)
Anne Schueler is the mother of soon to be 5 children, ages 12, 9, 7, 3, and 20 weeks gestation. She and her family live in Cincinnati, Ohio with their oldest daughter’s service dog, Beyonce. Her daughters Gianna (12) and Pia (7) were diagnosed with USH1B at age 5 and 9 months respectively. Both girls are bilateral cochlear implant users and attend their parish school in a mainstream setting. Since the time of their daughters’ diagnosis, she and her husband have committed to finding ways to support them that are practical and positive while also connecting with other families facing the same challenges for guidance and comfort. While watching her daughters deal with this syndrome has been difficult, Anne and her family are privileged to have met so many incredible role models with Usher syndrome and their families, and for that, they are thankful to be a part of the USH family.
*Moderator* Dr. Westerfield is the Director of an Usher syndrome research laboratory and has two adult children with Usher syndrome. (Click for Bio)
Monte Westerfield, Ph.D.
Dr. Monte Westerfield has two adult children with Usher syndrome. Monte is the Director of an Usher syndrome research laboratory and a Professor of Biology at the Institute of Neuroscience, University of Oregon.